Lets do a roll call on adjuvant Herceptin trial

Hi! I was diagnosed in July, 2001 with 3cm tumor and 7 positive lymph nodes. I had 4 A/C , 12 weekly taxol with herceptin and then 40 weeks of herceptin. I ended my treatment in November, 2002. So far so good. I am 41 years old and I feel good.

My diagnosis was ER/PR-, HER2 3+, stage 2a, 3.8 cm tumor, node negative, lumpectomy and I am in the BCIRG 006 trial and so far I'm NED. I was assigned to the arm that received taxotere/carboplatin x6 and Herceptin for a year. The Herceptin was given along with the taxotere/carboplatin and then continued for the rest of the year. After that I had radiation with 5 boosts. I began the trial January 15, 2004, and had my last treatment of Herceptin January 4, 2005. At this point I'm NED.

Bonnie

Hello, I was diagnosed in November 2003 with a 1.7 cm. tumor and one positive node out of six. I had 4 A/C, then 12 weekly taxol with herceptin and 40 weeks of herceptin. I'll be done in June. They had to take me off the herceptin for a month because my MUGA scan dropped dramatically, but I also had the scan one day after having a very high fever. My heart recovered. So far, so good. Monica

Hello - I was dx in Dec 02 at age 33 with 1.5 cm tumor, her2 strongly+, er/pr strongly +. Had lumpectomy, 4 AC, 4 taxotere with herceptin and then 12 additional months of herceptin. Also had rads, and take lupron + Arimidex.

I did enter one of the herceptin trials, but was randomized into the arm that didn't get the herceptin. So I dropped from the study and begged my doctor to give it to me and he finally relented. I do feel some guilt that I "cheated" by not staying in the study but I felt in my heart that I had to persue the herceptin. Honestly, I would have done nearly anything to get it.

If Mary H (above) is the same Mary H who e-mailed me way back when to encourage me to go on herceptin (and to take Arimidex instead of Tamoxifen) please know how grateful I am to you. I think of you often and will never forget you and how much you influenced me to press for the Herceptin. Thank you.

Love and hugs to all,
Lauren

Hi, I 'm stage 2b, er/pr +, 3 + nodes, multifocal, her2-3+, grade 3..diagnosed May 03. I am enrolled in the B31 trial as well, but got randomized to the control group. I got 4AC, then 4 Taxol. I did not get Herceptin, but so far I am fine. I can tell you I have mixed emotions about all the Herceptin talk. I wanted Herceptin, thinking I would be doing all I could possibly do to fight my disease. I was taken aback when I learned a few months ago people were getting Herceptin "off-trial". I inquired to my onc, as well as another at a major cancer center about taking the drug without a trial. It was not offered. I didn't even think it was possible since it was not FDA-approved for early stage. I'm obviously happy for anyone who has received this drug and living cancer-free. But I feel a bit cheated out of something I wanted. Sorry to get this off my chest. I also had a friend I met soon after I was diagnosed, who was also participating in the trial. I asked her many questions about it. Unfortunately she died this past fall after about a year and a half post-diagnosis. My heart breaks for her family, knowing the drug could have been accessible. I asked my oncs about taking the Herceptin now, after the fact. They did not have any clear answers as to whether it would help. They will be attending the Oncology conference next week. Hopefully I'll have some answers soon. Has anyone here taken Herceptin after they've finished all chemo? I'm grateful to have a forum to discuss this very issue. Thanks, Kelli

My diagnosis was in December 2003. I had a contralateral mastectomy in Jan of 2004. ER/PR-, HER2 +, stage 3a, 10cm DCIS with multifocal tumors 4 nodes positive. I am in the BCIRG 006 trial and so far I'm NED. I was also assigned to the arm that received taxotere/carboplatin x6 and Herceptin for a year. The Herceptin was given along with the taxotere/carboplatin and in the weekly intervals, and then continued once every three weeks (a triple dose) for the rest of the year. After that I had 28 radiation treatments with 5 boosts.

I did have to stop Herceptin for one month due to a bad ejection fraction, but then went back on with no ill effects.

Kelli,
I am in the same "no herceptin" boat, but for slightly different reasons. Although I was 2/13 node positive, grade 3, her2+++ my onc did not push a herceptin trial and instead I did another one that he considered "aggressive." I have since learned so much more about her2 and deeply regret my decision. I finished chemo 8 weeks ago and am halfway through rads. I too will"cheat" and go off this trial, (even though I'm done with chemo), to get herceptin. At 46 I'm not going to sit around and wait for a recurrance to happen.

I sincerely hope ASCO will address what to do with us in the gray area because I know for a fact my onc will not give it to me unless there is a protocol.

I am very curious to know what other's in this gray area are going through. What are your onc's saying and doing?

Diane

Diane,
Both oncologists have not been rushing to get me on Herceptin. The one at Hopkins wants to go to the conference before giving me a conclusion as to what to do. I don't believe they know the answers to if receiving Herceptin alone and post chemo is any benefit. I am just not sure what to do. I may survive this for years even without Herceptin. Who knows? I am asking myself if I want to go through the hassle of getting a port again and weekly infusions. I am well on that road to recovery, exercising, and feeling good. I feel so mixed about all this. The more I read others'
responses and experiences with chemo the more uneasy I feel. Everyone I dealt with just didn't get overly excited or pessimistic about my prognosis. I feel more vulnerable as I read more, yet I have the need to be informed. I'll post again as I know more. What are you doing? Kelli

Kelli,
I see my onc Wed. and have a whole list of questions, the first being about the availability of herceptin for me. I'm pretty sure he will want to wait for word from the ASCO meeting too. I saw my rad onc this afternoon and he said I should push for it. Incidentally, he had no idea I was her2+++, which I thought that was interesting! Does it even matter?

I'll let you know what happens Wed.
Diane

I was diagnosed 6/03; 2.9cm tumor; 10+/16 nodes; did not participate in a trial because I was nursing when diagnosed and could not have immediate surgery; I did A/C dose dense first; then surgery; then 12 weekly taxols with herceptin; 28 treatments radiation & 40 more weeks of Herceptin finishing in Aug/04. At first I really wanted another 6 months of Herceptin but have accepted the "no" after 3 opinions and am thankful for the year that I was able to get. I know that the role call was for trials but I kind of did it off label. Am NED and just finished the Avon Breast Cancer Walk in DC (39miles) and made it! Whew!

I'm in the BCIRG 006 trial and am on the arm with 4 x AC, 4 X Taxotere and a year of Herceptin. I have 2 more Herceptin treatments to go and then I guess I'm on my own! So far so good!


All the best to all of you!

Cheers
Pauline

[Kim in DC]

Hi,
I was diagnosed 8/2004 with inflammatory BC stage IIIC. I received 12 weeks neoadjuvant Herceptin/taxotere and and 12 weeks adjuvant Herceptin/navelbine. So far no mets. I'm looking into PA vaccine trial

Kim

Hello!! In the arm of no herceptin.. but got the news tuesday that my doctor wants me to go forward and get it. At 34, he feels quality of life is more important. There is much to consider, with the heart damage I got from AC and Taxol. I lost a total of 16 muga points.. I have since gained 11 back and have one more muga tomorrow and then we will talk about an echo test. The study may drop me, since I did dip below 50. I have been out of treatment for 6 months now. It should be interesting.. but I want herceptin in a bad way!

I was dx in july 2003. I was in the no herceptin arm. My doctor called last week to ask if i wanted to start herceptin. I am getting my port put back in tuesday and will start friday. I am very happy to be getting this. I am almost to the two yr mark don't know what that means in my case but my doc really wants this given the size of my tumor and several positive nodes. I am grateful for herceptin. I am 35 with two small children.

I was in the B-31 Trial. Recieved AC then Herceptin weekly with paclitaxal every three weeks. After completing the paclitaxol I was to have continued Herceptin weekly for an additional 9 months but I had to discontinue use of Herceptin because of heart damage. Regained normal heart function 8 weeks after discontinuing Herceptin. Hopefully, I recieved the benefit from Herceptin because I had it through all of my chemo...at least that is what my Onc. thinks. I was DX'd in April of 2002. Had my last MRI in Feb. and everything came back clear. Currently I am NED. Linda in Calif.

Hi, I'm late to this interesting thread. I enrolled in NSABP B-31 in April of 01, and lost that toss - no Herceptin. It was an extremely hard blow then. I'm okay with it now. I'm NED, initial diagnosis of occult primary with a 6cm axillary node (five of eleven were positive), ERPR-, grade 3. I'm concerned about those in the control groups who have recurred, or who are NED but still suffer from Herceptin envy.

To me, this trial differed from many, in that the outcome was already fairly certain to most (that it would have some benefit), the risk was small, and the stakes very high (high risk adjuvant treatment, potential "cure"). What do you think of the idea of Genentech and/or the trial groups offering formal support (emotional) to those who didn't get Herceptin and are having a hard time with that, especially those who've had a recurrence? I don't know that it would make a big difference - but it would be a nice gesture.

Also - do you think that out of these trial stats they'll be able to find any hard info on exactly HOW much it increases risk of recurrence, and/or aggressiveness, to have HER2+ cancer? There seems to be a lack of hard information - in fact, it doesn't seem that we know much more about quantifying this increased risk than we did when HER2neu was first discovered. Anyone close to the cutting edge on this, with some information? I'm also curious to see something about FISH levels (actual numbers, not just + or -) and corresponding increased or decreased risk and treatment response.

Debbie Laxague

I have been on herceptin since 1999. I am wondering why. I have had recurrences in lymph nodes (under the opporsite arm as well as chest wall and inflammatory bc after a lumpectomy with 19 neg nodes) and have done taxol/herceptin, navelbine/herceptin, now I'm on Xeloda and herceptin. it seems many of you stopped herceptin after trials - my dr recommends staying on it - it is very expensive as you all know and is depleting my lifetime max for insurance. Has anyone else been on herceptin for a long time? Those of you who have stopped after a limited time - were you told the reason for stopping it? Any help would be greatly appreciated.

I was DX in Oct. 03 and was enrolled into the BRCIG 006 trial and started in Dec. 03. I drew the Taxotere, Carboplatin, Herceptin arm. I was stage II or III depends what path report you get? 3/12 lymph nodes +. I had 30 days of rads. I was er/pr- and HER 2 3+++ with FISH 7.6. I had 6 rounds and weekly Herceptin for 21 weeks then every 3 weeks for 52. Ended in Dec. 04.
Am Dancing with NED and don't think I will every stop.
Would love to see some data on this combo.

[Rozebud]

Joann - I can only guess he has you staying on herceptin because of your lymph node recurrance. The women who are on trial and stop herceptin have not yet had a recurrance. Even if it is local, my understanding is that once you have had one, you are outside "clinicial trial" status and often stay on herceptin indefinitely. Hope that helps. I haven't had a recurrance and would love to stay on it longer! However, you make a good point about depleting insurance lifetime maximums....

I have been trying to get Herceptin. My onc will not give it to me. Dx 12/02 at age 39, IDC 2.5 cm, ER/PR -, HER2 +, but node negative. I had four rounds of A/C and right mast.

I am NED at the moment, but scared what the future holds because I am HER2+.

I want the Herceptin but I cannot find anyone who will give it to me with negative nodes and this far out of treatment.

Anyone with negative nodes, Stage IIa in the same situation??

Thanks for your responses.

Wendy